World Heart Day: Seven-year-old Newry boy named a BHF Young Heart Hero after three open-heart surgeries
1st Oct 2026
Leo O’Brien’s story is being shared ahead of World Heart Day to highlight congenital heart disease and the lifesaving research giving children with heart conditions hope.
The mother of a young boy from Newry who has faced three open-heart surgeries and years of treatment for a complex congenital heart condition insists her son is an inspiration.
“Even when you have been told there is very little hope, Leo shows that a child can still have a good life,” says Emma O’Brien.
Seven-year-old Leo O’Brien has been named a British Heart Foundation Young Heart Hero for defying expectations.
His family is sharing his story ahead of World Heart Day on 29 September to highlight the impact of congenital heart disease and the lifesaving difference made by decades of BHF-funded research.
Leo was among an inspirational group of children from across the UK recognised by the British Heart Foundation’s Young Heart Hero Awards, celebrated at a ceremony at Paradox Museum in London.
The ceremony recognises inspiring children, young advocates and fundraisers who have overcome incredible challenges and made a difference in the fight against cardiovascular diseases.
His mum, content creator and BHF retail ambassador Emma, is offering insight into Leo’s experience to offer other parents hope and champion research that could improve Leo’s future.
Leo’s heart condition was first suspected during Emma’s 20-week pregnancy scan in early 2019, when the sonographer could see only two chambers of his heart. Further specialist assessment confirmed hypoplastic left heart syndrome, in which the left side of the heart does not develop properly.
After Leo was born in August 2019, doctors also discovered a severely leaky tricuspid valve, adding to the complexity of his condition. He became critically ill and was transferred to Birmingham for specialist care. Following further review, surgeons were able to operate when he was one week old.
Emma said: “At the 20-week scan I felt like a rabbit caught in headlights. I had so many questions, but nobody could tell me whether Leo would live. I remember leaving the hospital in pouring rain, completely floored by what we had been told.
“When Leo was born, the picture was even more complicated than we had expected. We fought for him to be assessed for surgery, and when Birmingham agreed to take him to do both the surgery and the valve repair, it gave us a chance.
“Usually the surgery on its own is high risk, but they explained to me that adding a valve repair on to this already complex surgery meant the risk was even higher.”
Leo underwent his first open-heart operation at a week old. His early months included a lengthy hospital stay, difficulties gaining weight and numerous failed attempts coming off the ventilator, resulting in a very anxious time for Emma and her husband.
Leo returned home just before Christmas, before travelling back to Birmingham for his second open-heart surgery early the following year.
Emma said: “That first year was incredibly hard. Leo was tube-fed and I had to weigh everything he was given, but he kept surprising everyone. He came off the feeding tube at around 10 months and learned to eat normally. Even as a baby, his determination was clear.”
In August 2025, Leo underwent his third open-heart surgery in Birmingham. Before the operation he had become breathless, cold and unable to keep up with other children; his oxygen levels were typically around 78 to 80 per cent. Emma says his oxygen levels are now around 94 per cent and the difference has been “incredible”.
“Leo told us he was going to Birmingham to ‘get his legs fixed’,” Emma said. “He now feels like he is flying. He is back at school, full of energy and convinced he is going to win sports day. His physical ability may still be behind other children because he spent so long unable to join in, but he feels amazing in himself.”
Emma began sharing Leo’s journey online to help other families feel less alone. Her advocacy also led to her becoming a BHF retail ambassador, supporting the charity’s shops and encouraging people to help fund lifesaving research.
Emma said: “I want to offer hope to families who may be where we once were. Even when you have been told there is very little hope, Leo shows that a child can still have a good life. If sharing his story makes a difference to one family, it is worth it.
“I feel it is my purpose to raise awareness and support research that could have a positive impact on Leo and the life he gets to lead. We are so thankful for how well he is doing, and his resilience continues to amaze us.”
Fearghal McKinney, Head of British Heart Foundation Northern Ireland, said: “This World Heart Day, Leo’s story is a powerful reminder that heart disease can affect people at every stage of life. He has shown extraordinary courage throughout a journey no child should have to face. By sharing their family’s experience, Emma is also helping others facing similar uncertainty to feel less alone.
“Decades of BHF-funded research have transformed the outlook for babies born with severe congenital heart defects, but there is still much more to do. With the public’s support, we can continue powering breakthroughs that give children like Leo the chance of a healthier future.”
Before the BHF existed, most babies born with a severe congenital heart defect in the UK did not live to see their first birthday. Today, with the help of decades of BHF-funded research, the picture is very different: more than four out of five babies diagnosed with a congenital heart defect in the UK now survive to adulthood.
This research includes the work of BHF Professor Robert Anderson, who mapped the anatomy and electrical system of different congenital heart defects during the 1970s and 1980s. His work enabled surgeons to avoid placing a stitch where it could disrupt an electrical circuit in the heart, making surgery safer for children like Leo.
Nominations for the Young Heart Hero Award 2027 open on 25th November. For further information on this and on ways to support BHF, please visit: bhf.org.uk
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For further information, interview requests or images, contact Kate Ferguson at the British Heart Foundation on fergusonk@bhf.org.uk or call 07967273190
